A lot more doses later

Bennie has been a trooper.  Each dose causes Bennie to decline more and more.  He is sleeping most of the day now, and is really kind of in a fog.   Today he has received doses 6, 7, and 8.  We almost had to hold off on some today because his Uvula in the back of his throat swelled up quite large.  It is making him really uncomfortable, and he can barely eat or drink. It caused quite a scare because we were not sure if it was his whole throat swelling, or just that part.  It seems it is a cause from all the fluid retention.  Some people swell up in their legs and hands, but Bennie swells up in his face and Uvula.  He has gained probably about 10 pounds or more from the fluid, and as soon as the doses are finished that will all come off.  One of the side effects is called capillary leak syndrome.  It basically is caused by low blood pressure, and the fluids that are being pumped into him are not able to come out.  So... between his fast heart rate and the swollen throat we almost had to hold off, but he said bring it on and they brought it.  The Dr. will call tonight to see what his stats are, and will determine if we are going to go through with the next dose.   Bennie is ready for the white flag to be waved on this treatment for the week, but he is ready for the next one if need be.  It is so hard to see him look so miserable, and out of it.  Luckily, once all these medications stop they say you bounce back relatively quick?  Hard to imagine that currently, but we shall see.  Thank you so much for everyone who has come together for support for us, and for the prayers.  He reads all of the encouraging posts on Facebook, and we would not be able to get through this if it wasn't for all the people behind us right now.  There have been so many people who have helped us out, and we are tremendously blessed by each and everyone rallying behind us.  We did get a nice surprise today.  The nurse said that kids are able to visit here, and Judy brought them up to visit for awhile before his 8th dose.  We loved that so much.  We have never been away from them for this long, but they are taking it very well.  They were sad to leave the hospital without Daddy, but I think it helped for them to understand where we are.  It was just what we needed to drive us through to the weekend, where hopefully we will get to leave.   PLeeeeaaase let us get out this weekend!!!!!!!!!!!!!!!!!!!!!!!!!!  One day I am going to invent the neatest, and most comfortable fold out chair for guests staying at the hospital.   I am going to corner the market with this chair, and all Fathers who have to stay at the hospital when they have newborns will thank me.  There will be a holiday named after me for the invention of this chair.  I will have a lot of time to invent this chair, as I sit here trying to get comfortable in the current hospital chair.